The Playpen

You’d probably have your head in the sand if you were not aware of the growing movement toward eco-friendly and organic products these days. And, while members of my generation seem to be embracing the change, it is truly our children who must take the reigns and change our culture to respect, repair and love the planet on which we live.

Hilda Orosco, one of our oldest and dearest friends (she wrote a very touching post to Frankie right after we opened for business), is the founder of Green Stuff Connection, a fabulous “one stop shop” for organic and enviro-friendly clothing, accessories, gifts, bath and body products…even jewelry. I personally have purchased several of her products and have been very happy with them, the most recent being her Fiji Breeze Soap Bar, which I absolutely love. Green Stuff Connection is a member of the Organic Trade Association, and also features a monthly blog packed full of environmental tips, data and resources for the Earth-conscious.

This coming Monday, we are honored to have Hilda guest authoring on The Playpen. Her topic will be tips and pointers for going green in your baby’s nursery. As we all know, many products on the market today not only impact the environment in a negative fashion, but also can actually be hazardous to your child’s health. Hilda will be sharing her experience with us and will reveal the simplest and best ways we can keep our babies safe, while taking care of the Earth as well. Hilda, we look forward to having you!

Matt
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When Frankie was born three years ago, among other problems she was diagnosed with a defect called ASD, or Atrial Septal Defect. Septal defects are sometimes called a “hole” in the heart. When there is a large defect between the atria, a large amount of oxygen-rich (red) blood leaks from the heart’s left side back to the right side. Then this blood is pumped back to the lungs, despite already having been refreshed with oxygen. This is inefficient, because already-oxygenated blood displaces blood that needs oxygen.

What did this all mean to Frankie? It meant that later in life she “may not be able to keep up with other kids”, as her cardiologist put it.


Symptoms of ASD include:

Severe complications include:

Many people live with ASD in some way every day and never even know. The symptoms and risk of this defect are determined by the size of the “hole”. In Frankie’s case, it was 6mm, which is very large. For females, 1mm or smaller is desirable (smaller than boys due to the strain placed on the heart during childbirth later in life.) It should be noted that this hole is present in all unborn fetuses to allow blood to bypass the lungs, and typically closes at birth. Because the hole may not have closed completely at time of birth, this defect is present in many pre-term babies like Frankie.

An atrial septal defect used to require open-heart surgery. Now, a relatively new procedure has been developed to close the defect without surgery. The procedure involves the introduction of an ASD closure device (such as the Amplatzer device) into the heart through catheters. A tiny incision is made in the groin to introduce the catheters. They are then advanced into the heart, where the closure devise is placed across the ASD and the defect is closed.

This, to us, was still very frightening, as anything foreign introduced into our daughter’s heart could cause complications. So we watched it very carefully, going to the cardiologist every six months for EKG’s and Echocardiograms. Around two years of age, we were fairly convinced that Frankie would have to have the procedure…it simply wasn’t closing.

Then, something amazing happened. On our second to last visit, her doctor told us that he couldn’t see it. He said it may have closed, or may simply have been a bad echo…they are not completely accurate, particularly when the patient moves a lot. So we scheduled another one 4 months later.

Frankie’s last appointment just happened and, to our disbelief and joy, the hole had completely closed! The cardiologist actually told us that he didn’t expect it to; it is fairly rare for them to close at this late of an age. We were absolutely overjoyed and thankful. Once again, our stubborn little bull-headed demon had willed herself to heal against the odds. Frankie, we are so proud of you. When you read this you probably won’t even have a memory of this entire drama in all of our lives, but know that you are an inspiration to us and hopefully to others who have children with the same condition. And thank you from the bottom of our hearts to all of you who supported her and prayed for her…we are truly blessed. Time to celebrate!

Matt & Aline
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My wife went to the doctor yesterday for some routine tests and checkups. What should have been a pleasant, positive experience turned into a nightmare. First, he misdiagnosed something that scared her quite a great deal. Second, he was rude…SO rude and inconsiderate to her that I will be filing a formal complaint with the hospital.


When she called me in tears, I promptly left the office and drove to the hospital, where I found her upset and red-eyed on a bench outside. After she explained to me in detail about how tactless he had been, and about what he had told her, we agreed that he had indeed left some important information out, and that we needed to go back in to get the rest of the information.


I admit I was shocked at what a *censored* this guy was when we entered his office. Even with me there attempting to ask questions he would interrupt, and condescendingly dismissed our questions. But we persisted, despite his attempts to shuffle us out of his office. Finally, when we started to question some of the language on the report my wife had been given, his attitude changed slightly. He finally looked at us instead of his computer screen and told us to sit down. Although his personality remained abrasive, he spent quite a bit of time with us, and answered all our questions, after which Aline felt much better.


Which brought me to an interesting revelation and the query in the title of this post. I realized that my wife and I were not behaving in the way that average patients behave, we were behaving like preemie parents. We were stubborn, insistant and thirsty for knowledge. As I am sure any parent that has spent a fair amount of time in the circus known as the NICU can attest, you quickly become an expert on medical procedures, equipment, risks, stats, readouts, beeps, bells and more. Your fear and love for your child forces you to become involved; to seek out the answers and explanations that will, at the very least, provide you with the tools necessary to insert yourself into the process and make educated decisions about the future of your child. Before you know it you are discussing de-sats and nasal cannulas, atrial septal defects and bradys. You are questioning the doctors and interns, arguing with the nurses and pointing things out you wish them to pay more attention to. It changes you, whether you realize it has or not. From that point on, you are no longer happy with “I wouldn’t worry about it”, or “You’ll be fine”, from doctors. You want details. You want to make sure the information is accurate, and you absolutely want to be positive they have paid attention to the details and delivered an accurate prognosis.


Let me say, on record, that I owe absolutely everything to those who helped my daughter through her stint in the NICU. Those people, and all of the people elsewhere in their profession, can never be repaid. My point is simply that, surviving the NICU has made me realize that doctors are human. With no disrespect to their intelligence, intentions or experience, some of them lose their way. Some of them make mistakes. Some of them, like my wife’s new best friend mentioned above, simply have the personality of a tree stump. So, while I owe an un-payable debt of gratitude to all of you for what you have done for my family and what you will continue to do for others, know this – I will continue to question everything you tell me until I am sure it is correct and the best possible guidance you could give me. And if my refusal to leave your office until you have answered all my questions irritates, annoys, frustrates or upsets you in any way, deal with it. You are the doctor, I am the parent of a preemie, and I need you to answer my questions so I can sleep at night.

Matt
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Although we try to reserve this blog for tips and stories regarding preemies and parenting, one of the parenting blogs we read, The McMommy Chronicles invited us to participate in her Meme. Since we feature our story and photo on our main site, but we don’t really offer any insight into who we are on The Playpen, we thought it would be a great opportunity for you to get to know us. This weeks topic: “Seven Things About us You May Not Know “. Thanks, McMommy!

FRANKIE

1. Her middle name is “Marley”, named after the late great Bob.

2. Was born at 32 weeks (3lbs, 6oz.), and spent a month-and-a-half in the NICU at Cedars-Sinai in Los Angeles. She’s now three and doing swimmingly!

3. Recently BEAT a condition sometimes associated with prematurity called ASD (more about this in next weeks post).

4. Loves the song “I Would Die For You”, by Prince and the Revolution.

5. Favorite activity at the moment: “Gardening”. (i.e.-taking a shovel and throwing dirt all over our tiled patio).

6. Hates….I mean HATES, having her hair washed, going to bed and any type of meat.

7. Loves….making art projects at daycare, saving them for us, then completely destroying them in the car on the way home.

ALINE

1. I love to read. I find comfort in cuddling up with my blankee and getting into a really good book. I do however have a darker side to reading, I go through these phases or reading trashy historical romance novels, the real cheesy kind too. You know, the ones with the tanned sea captain and the beautiful frail maiden? Yeah that kind. I never buy them, I check them from the library and anonymously return them.

2. I was born in a country of war, and pretty much until I moved to the States, hearing and seeing bombs drop all around our house was a “normal” thing.

3. My Parents never made it to the hospital in time for my delivery, I was born in the front seat of a cream colored 1969 VW bug.

4. Wore blue contact lenses in high school, and when asked if they were fake (as if you can’t tell) I would say no. I figured since my dad and brother have blue eyes people will think “oh it’s in the genes!”.

5. If there was a seed eating contest, I would win it every time. Due to my background, the skill of “cracking and opening” seeds comes innately to me. I’m the Speedy Gonzales of seeds, I can fill up a bowl in half the time any human being can. It’s quite impressive.

6. In my country they sell little “chicks” during Easter on a mobile cart. So, along with chocolate bunnies, marshmallows and jelly beans you can pick up a baby chick if you wish. I, of course had one. Took care of it like a pet until we couldn’t keep her in the house any longer. She ended up on a good farm where I would visit quite often.

7. One year my Grandparents gave me two hamsters for Christmas. By next Christmas I had 27. Yes, I do love the animal Kingdom.

MATT

1. I have played golf, piano and guitar for over 20 years. I have gotten progressively worse at each every year.

2. I gag whenever I eat pumpkin pie, but I also love the flavor. So one of my wife’s favorite Thanksgiving traditions is me sitting at the dinner table, pounding pumpkin pie while coughing, choking and gagging (got the visual?).

3. I wasn’t that excited about having my daughter for the first six months of her life. Now I would step out in front of a bus for her a thousand times over.

4. I don’t think my wife cooks arroz con pollo enough (It is absolutely delicious).

5. When I was in high school, I had curly hair down to my mid-back, a denim jacket with the cover of Iron Maiden “Killers” airbrushed on it, about 100 heavy metal buttons, and a little plastic skeleton hanging from each front pocket. I am considering bringing this look back.

6. I have a hard time coming to terms with the fact that I can’t just jump on a skateboard or dive for a football any more without seriously injuring myself. (I ran into a parked car on a post route after a night of tequila and lime on the rocks recently).

7. I have had some ups and down in my life over the past few years, and it has been a challenge. But through it all I have realized that my friends and my family are the one constant you can depend on. That, in and of itself, makes the rest of the “noise” irrelevant.

The next part of the process is to tag other blogs we read and invite them to join in. Be sure to post a comment so we know you’ve added your “Seven Things” to your blog.

Green Stuff Connection

God Gave Me You

An Ordinary Life

Matt & Aline

Visit our online boutique for the latest in fashion and fun for preemie through toddler

I think all Moms question themselves in some form or another. One day I feel like I’m doing a great job, the next; I feel as though I suck at it! I try to have as much patience as I can with my daughter but once in a while (and I’m not ashamed to admit it) I just lose it! I feel so guilty after that happens. I scold myself to have more patience, more ! more! While reading through parenting articles and such I found these tips that I thought made sense and made me feel good about my mothering skills. I put them up on the fridge, and I refer to them every so often. They make me feel better about my mothering skills. I am human after all. They’re simple, yet a powerful reminder. I know you know what I mean.


Wisdom for Happier Mothering

We all have guilt — just don’t let it take hold. “Every mom has her own tailor-made set of guilt triggers,” says Paula Spencer, mother of four. “I think we feel guilty precisely because we are so well intentioned and want to do the best we can by our kids. I don’t think it’s entirely possible get rid of guilt — you just have to stop taking it seriously.”


Sharing makes you realize you’re not alone. “Seek out support,” says Colleen Newman. “By sharing with others you’ll be reassured that you’re not alone. Don’t be afraid to talk about how your toddler flushed your razor down the toilet. They will probably tell you about the time their toddler used their toothbrush to clean the toilet! Laughing about the absurdities of parenting makes everything a lot easier.”


It’s a learning process. “I learned to take care of myself gradually, and I continue to learn valuable lessons about how best to do that,” says Kathryn Sansone, whose children range in age from 8 months to 18 years. “Now, ten children and 19 years of marriage later, I can say that on most evenings when my husband walks through the door, I can smile.”


Taking care of yourself is important. “Do one thing each day that nurtures you,” says Yvonne Lefort. “Take a bath, go for a walk, listen to your favorite music, make yourself a cup of hot tea, call a friend, read a chapter from a good book, buy a new lipstick! Do something nice for yourself each day, even if it’s only for a few minutes.”


You are doing your best. “We are all doing our best, even when we fall short,” says Sybil Lockhart, mother of two girls, ages 5 and 9, in Berkeley, California. “Since we can’t do any better than our best, we may as well call that perfect.”


Your kids will be okay — really. “I just look at how well he is doing,” says Sherri Helwig, mother of a 4-year-old son in Scarborough, Canada. “Although I sometimes wonder if this is actually because of our faults rather than in spite of them. When our son sees us make mistakes — and take responsibility for those mistakes and fix them — I think he learns a valuable lesson.”


Aline
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